Early Learnings and Advice for New Celiac Patients

[greensleeve 1]

I've been gluten free for approximately a month, which I realize is not a long time. I saw my allergist yesterday for a regular check-up. At first, I think he thought I was off my rocker when I started asking about DH and celiac. He pulled out my blood allergy tests from a year ago and said I was "way up there" on the wheat allergy and shouldn't be eating it at all.

I explained I only have these weird, pimple/bug-bite-looking things on my face/neck/scalp that burn, sting and sometimes itch. I've also had them on my rear end. I also explained that I often have hives that itch intensely. I have gotten some relief in that last few days. The hives are much less frequent, and the weird bumps have subsided approximately 30%.

So, doc says it could be food/environmental allergies, celiac, lupus, autoimmune and a couple of other possibilities. I have Hashimoto's, so he thinks it could be another autoimmune thing driving this weird skin stuff.I am also allergic to a ton of environmental things. He wants to do a battery of tests, and I'm just not sure I want to go down that road right now. They are very costly, and I've taken many medicines and tests with improvement or diagnosis.

I am inclined to see how I progress on my gluten-free diet. I have been put through the wringer and am not elated about a doc doing a bunch of other tests. I know many of you have been down this road, and I am just looking for some support and guidance. Thank you for reading!

[mushroom 1,209]

And, let me guess.... he did NOT suggest dermatitis herpetiformis (skin form of celiac) as a possible diagnosis.

First of all, did he do any celiac testing in his allergy testing, or is he saying you are allergic to wheat? And if you are allergic to wheat, or even if it showed you are celiac, how come he just filed those results a year ago??

If you have been gluten free for a month and have not been celiac tested, it is probably a waste of time now. However, you can go to a dermatologist and have your rash biopsied. A positive DH biopsy is a diagnosis of celiac. The dermatologist has to know how to do the biopsy - it should be taken adjacent to an active lesion and it needs special staining, so make sure you find someone who is aware of this. If this comes back positive, then you don't need any additional testing for diagnosis, just blood tests for vitamin and mineral levels, and thyroid.

One thing you can do for your rash if it is DH is temporarily eliminate iodine from your diet, as in susceptible individuals iodine can really flare it up. Cut out eggs, iodized salt, any seaweed in supplements or sushi - you can google a list of foods high in iodine. DH often takes a lot longer to settle down than other symptoms of celiac.

I don't have DH myself so I hope others who do will come on and give you more information.

And by the way, welcome!

[squirmingitch 629]

There are oodles & boodles of us who are self dx'd for the same reasons you are fed up with doctors & testing. You don't need a doctors permission to eat gluten free. You don't need any one's permission --- only your own. I will warn you though if you go gluten-free & then decide later you want that official dx ----- all the celiac symptoms including the dh generally come back in spades when you try to do a gluten challenge. So decide now IMHO.

You have our support! Unquestionably!